Hi everyone just an update on my GP appointment for my funny turns. Well I stuck to the one issue. He listened as I described them then queried visual disturbances, what they looked like, did I drop down, was I nauseous, what colour flashes, where the head pain started and finished, any smells, sounds, how long they lasted, what was I doing beforehand etc. His view is a rare form of migraine but he is concerned about the left sides weakness and feeling faint and lack of feeling in my foot when they happen. We discussed treatment options and he was very reticent to prescribe high dose aspirin given my gastric problems and migraine treatment without eliminating other neurological issues he might be missing. The waiting list for Neurologist is 12 months but I can see his preferred Consuktant next week for a private consultation. We are struggling financially but I have little choice. Thank you so much to everyone who gave me advice and support with this. I had another turn in the supermarket as we called in to get some fresh fruit and veg. It has left me with a hell of a headache.
Great GP appointment: Hi everyone just an update on... - LUPUS UK
Great GP appointment
Are you noticing of they are made worse by exposure to fluorescent lighting, because you've just described my symptoms. I'm ok with LED lighting but old fashioned strip lights, halogen or anything other than LED cause it. I'm being investigated by immunology and neurology.
Funnily enough my husband said I was squinting in the surgery, they have long strip lights and of course the supermarkets are very bright too. I had the start of a left sided headache going into the supermarket and then flashing lights blue and red then the giddiness. My husband grabbed me as a reeled backwards flailing my arms and dropping my sticks, then my left arm went so weak I was unable to hold anything with it. It is a very strange feeling isn’t it?
Hi CecilyParsley
Sorry to hear your suffering with left sided weakness and unusual sensations .
I’m wondering if this is quite common , with lupus . I feel your not on your own with left side worse than the right .
I think even though it’s quite an expense to go private , I would take this route , so you get treated sooner .
🦋❤️
Thanks Willow I have just made an appointment to see the Neurologist two weeks today. I have always had balance issues since I became ill 11 years ago but this is something else. I could not feel my foot on the floor and was lurching as if I was drunk. All the while pins and needles in my left temple and around my left eye, my left arm felt like lead and flashes of blue and red lights. I felt that I would faint, went deathly white and the back of my neck felt hot but was not hot to touch. That was my worst one and lasted two hours. The others from 20 minutes to an hour leaving me with a headache. Xx
Hello lovely
I am glad that you had a positive GP appointment - about time you were listened to, taken seriously and helped.
I have suffered horrendous headaches in the past, they've been all sorts over the years - headaches caused by eye strain and stress, migraines, cluster migraine, migraine with myalgia in my eyes and ears and jaw, ice pick headaches and then I started getting the ear and eye pain without a headache, just severe stabbing pains.
Over the years I had tried so many over the counter meds and then from the GP. But by the time I was diagnosed with lupus nothing was working for me. (Which I understand is the case with lupus headaches - they only come under control if your lupus is controlled).
I started taking Amitriptyline and they took a while to get it under control - but these in conjunction with my other meds did eventually work.
I too paid to see a private Neuro, as these were never adequately dealt with by anyone else. Plus I had the usual brain fog and cold/wet sensations in my legs and back at times etc.
But your left side weakness and numbness in your foot sounds frightening for you and you need it assessment properly.
I am behind here, yet again, so I apologise if you've said this in other posts, but do you have APS? Have you had brain MRIs?
I know we shouldn't have go private, but like you say what choice do you have? I almost expect it these days.
Let us know how it goes and I am very glad that you will be seen so quickly.
Wendy xx
Thanks Wendy, yes I do have APS and take 75 mg aspirin. It is scary I was like a drunk . The GP was very good, horrified by the awful DR C comments of Fibro and hysteria. I see Dr D in Nevill Hall two weeks today..mind you it is closed today down to Coronavirus 😱
Yes. Two weeks time could be a very different situation for us all. Fingers crossed you can get to your appointment. xx
I'd have thought a referral to the fast track stroke clinic would achieve the same via the NHS. But at least he is taking it seriously.
He was definite that it was not a TIA. He feels it fits the migraine diagnosis very well but trails across three types of migraine and needs further exploration to diagnose accurately and treat given my other conditions .
No, but when the stroke clinic decides it isn't a TIA the next thing to be looked at is the neurology and they set it in motion. Been there, done that - they were totally wrong, couldn't recognise a TGA (total global amnesia) despite the A&E consultant getting it right immediately.
I have never heard of TGA. What causes it and how does it affect you if you don’t mind me asking?
You suddeny develop short term memory loss and tend have a small set of typical repetitive questions, It lasts 5 to 8 hours usually and then you suddenly land back in life but with some retrograde memory loss which does improve over time but may not return 100%. But you don't know what you can't remember, if you see what I mean. I was oblivious, it is far worse for your family to go through. I've had 3 CT scans for them, don;t remember any of them! Nor the time in A&E - good way to go through A&E/the ED 
Oh that is scary indeed. Is there any treatment for it? Do they know what causes it? Sorry about the questions but I am genuinely interested and horrified in equal measure. It must make your life very unpredictable and cause such anxiety.
No, you recover spontaneously after a few hours. I now have a pacemaker since they found I was having bradycardias with pauses in heart beat of up to 7 seconds which finally caused me to collapse last year so that was an essential but they think there is a link with such episodes in some cases of TGA and hope that will be the last.
I wasn't bothered by it - after the first in the UK they told me people don't have second episodes. Here in Italy they seem a lot more realistic and knowledgeable. I think OH was a lot more edgy about me doing things on my own.
You are making a good decision. Your doctor was very thorough but these things are not possible to differentiate with certainty.
I am pleased you are seeing a neurologist soon.
XK
Thank you, yes he was very thorough and was honest that he did not know what the best course of treatment was for me especially given the APS and UCTD. He noted my last brain scan was 7 years ago and felt that the Neurologist would want to make sure that it was not a type of seizure. The Neurologist I am seeing did my lumbar puncture when I was first diagnosed with Lupus and is a thoughtful and considered clinician. I feel that at the very least I will have a diagnosis and treatment plan that will help get these turns under control. Xx
Yes, it sounds like you are in good hands. The brain seems to make diagnosis tough, which is why neurologists focus totally on their area for several years. Your GP is impressive - really thinks things through. Based on my experience you will have further testing whether MRI or EEG or both.
Keep us posted. Feel better knowing you are getting evaluated!
XK
Yes he actively listened not trying to tell me what I wanted to say if you know what I mean. Too many doctors do that if you hesitate for a second they fill the gaps in. I understand why it is just frustrating to deal with when your brain is foggy. He stated he was no expert and although somethings I said appeared typical of migraine, others did not and given that I have been so poorly he felt that we should not experiment with drug regimes whereas if I was 20 and otherwise healthy he would deem those sort of trials necessary before a referral. I am just so very relieved that I was taken seriously and treated with respect . It makes the world of difference to patients xx
Hey, this is hard for neurologists who have have a lot of experience with autoimmune disease!
Honesty is important. My internist in NY did not do nearly as well with this as your GP. I didn’t have the weakness, though. We have less trouble getting referrals. I was first sent to ENT, then neurology. Your GP is impressive.
Xk
Oh I'm sooo pleased that u managed to make it to the appt this morning CP 🤗
U did well 🙌🙌
I'm extremely sensitive to flourescent lights too n supermarkets r a definite no-no for me..I have to wear a hat indoors as well as outdoors..for hospital n doctors appts..I always keep my hat on!!
Glad to hear you've got a neurology appt in a couple of weeks too.. you've done really well today..no wonder you're worn out!!
Rest up n please give yourself time to recover 💐💐
Kat 😽😽 xx
Thank you Kat. My head pain is subsiding now at last so I have been able to come back on social media xx
Even if I wear a hat and am covered from head to toe I am ultra sensitive to UV emitting light.
My symptoms are.
Instant migraine.
Nausea.
Palpitations
Chest, back, jaw pain
Collapse.
Slurred speech
Appearance of being drunk
Facial weakness
Rash across face.
It takes me about 48-72 hrs to get over. They are testing me for atypical seizures.
The starnge thing is that I am full conscious throughout and awake, I am aware of exactly what is going on but I can't communicate.
When I start to come around from this, and that only happens when someone switches the offending lights off, I can become quite hostile which makes me very ashamed.
My nursing friends who have seen it happen to me are also convinced it's done sort of seizure because of the drastic change in personality afterwards.
If a shop doesn't have LED lights, I don't even go in, it literally takes seconds to have a bad effect on me x
Oh my..I feel for u happy🌷
That must be horrendous for u 😔
This AI stuff is the wierdest ain't it!!
I hope that the testing for seizures shows something so that u can get treatment at least 😽😽xx
Thank you so much lovely. I see him two weeks today and I have to continue my symptom diary. It is a huge relief that I was not dismissed xx
I would have been upset if you had been “dismissed” with your symptoms. Try not to worry too much. Your APS could be contributing to atypical migraines. It is very complicated. Don’t be surprised if they cannot be certain what is going on. But they can rule out certain issues and they can still treat. I have been through this. Doing well on treatment.
Make sure the neurologist has access to your anti-phospholipid antibodies. They will want to see the titers and how often you have been positive to determine risk level.
XK
Thank you, Do you know this will sound bizarre but I am not worried I just have an overwhelming sense of relief that someone did not even question that I was experiencing these funny turns. I was not made to feel a nuisance or hysterical or a hypochondriac. This believe me is a rare occurrence for me and I am so pathetically grateful xx
Oh that sounds very scary. Poor you. Your funny turns are so much more serious than mine bless you. It is so debilitating isn’t it? I really hope that your doctors can come to a diagnosis and effective treatment for you. It must impact your quality of life tremendously. I wish you the very best of luck. Please let me know how you get on xx
Hi Cecily, I am so pleased to hear your GP appointment went well.
I also have weakness down left arm and left leg. Dizziness affects me on a daily basis, varying in severity. At best it's just the odd getting up too quick', at worst (which is most of the time now) everything spins, the smallest f movements makes me off balance, limbs and lips tingly, feet feel 'spongy', total disorientation, 'corkscrew' effect in my stomache and I can also get breathless and/or tight chest with it, too. The only thing that helps is to sit completely still, when accompanied with a crippling headache, a dark, quiet room all the way!
Rheumatologist didn't care less. GP also doesn't care. Contradictively, when I raised this with the outpatients manager, she said if I ever get weakness down one side, I need to make my way to the nearest A+E. Yes, because I am safe to drive when I am like that!
I have tha to fight and fight and fight for care. I FINALLY have a neurology appointment next Tuesday. It's the initial appointment so I don't expect to get answers, but atleast it's a step closer. It's also with Walton Centre in Liverpool as North Wales does not have the facilities or specialists for neurology - no surprise there!
Ceri - it is good you are seeing a neurologist soon. Dizziness is a common symptom and, though it could indicate something serious, it isn’t thought of as indicating a potential emergency. The person who told you to go to the A & E with any signs of limb or facial weakness or numbness. gave you great advice. Please discuss all of your symptoms with the neurologist. They will give you clear instructions as to what actions to take.
Good luck with your appointment.
K
Hi, ceri, glad you have finally got an appointment, hope all goes well. Please let us know.
Hi Ceri, I am so pleased that you are seeing a Neurologist too. About time. My goodness you have to fight so hard to get the smallest of assistance. I truly hope in light of the utterly rubbish Rheumatology appointment you had having had to go through such a hard battle to get it that this appointment will prove beneficial and supportive to you. Lord knows you deserve that. Please let us know how you get on. Xx
Thanks Lou. My relief is huge xx
I'm so glad you made it to the GP and he is taking this seriously. You have been through it and about time you started getting some help. Sometimes we just have to go the private route and hopefully your appointment in two weeks will be helpful. Look after yourself now. Those symptoms sound scary. And hopefully this GP is now back in your corner too. X
Thank you so much xx
I had not thought of that Lou because previously it has not been a problem for me but that is very good advice and I will definitely try it thank you xx
Glad you were able to see your gp, absolutely disgusted that you have to pay private. I suffered with migraines years ago and i used to take to my bed for 3 days at a time, vomiting room spinning and just could not move from one place. I then stared to look at what i had eaten , turns out it was dark chocolate that started one off. I stopped eating it , and thankfully not had one for about 8 years. I now have a small piece every now and again. Hope your private consultation goes well., prices they charge make sure you get your money’s worth. Best wishes.
I had two migraines in my life before and I am 58, both were in my teens and hormone induced by the contraceptive pill, prescribed for extremely heavy painful periods. I remember thinking that my head would explode with pain and if I moved my eyes or tried to sit up I would vomit. These are nothing like that at all. The headache is dull and throbbing, I have absolutely no nausea, which was why I totally dismissed the possibility of it being migraine initially. I have meticulously gone through everything I did and everything I ate prior to each turn and the only common denominator between two of the four is that I was in a brightly lit supermarket. My GP asked had I had a recent change of medication and of course the only change is that I had my Hydroxychloroquine upped to 600 mg then stopped. He noted the diverse, contradictory information from the Rheumatologists and commented that it was unhelpful and frustrating as a GP let alone a patient.
Well done for going to the doctors and well done him for his response. I had numbness all down my left side and couldn't walk or use my left arm, hand or leg. Hemaplegic migraines can be responsible for this. Let me know how you get on, my neurologist saw me have a funny turn when we were in London and he thinks I have an unusual autoimmune condition that causes me to have neurological responses. Take care Cecily and good luck.
Thank you so much Carole. Your story made me really think logically of what happened and look at the antecedents. I was able to present my GP with a detailed description that enabled him to decide what happened and how we should proceed. You made me think about what colour the flashes were, what shape, something I had described to my husband as floaters were not just brief flashes of blue and red lights that stopped when the headache started. I had completely dismissed migraine as my headache was not the most debilitating part of it the feeling on not feeling my left foot, heaviness in my left arm and feeling drunk and giddy but not sick was. I have been thinking since my appointment, the GP asked me had I suffered with migraine before and I told him only twice whilst on a contraceptive pill for heavy periods. But I remembered later that as a teenager I was diagnosed with abdominal migraine. I am not sure if this is relevant but at least I can tell the Neurologist. I really appreciate you telling me about your experience xx
You are very welcome I am so pleased that I was able to help you. Sometimes our situations seem so bad but talking to another person who has the same symptoms or similar can be helpful. Take care and best wishes for a diagnoses xx
Hemiplegic migraine am no doctor but have a look at this. My neurologist diagnose me with aura migraines which I found bizarre. God bless you xx
Thank you so much Angela. How are you feeling today? Xx
Cecily,
To be honest I don't feel to bad today.
I think cause I've spoken to doctor and he's ordered bloods nexted week.
And I've had tablet that neurologist describe pregabalin my husband got it from chemist this morning.
I know a. Way off getting answers but glad I feel little better and don't have the heavy crushing feeling though my body it's that I can't cope with just want to go back to work and gel normal.
Hope you are well and Thank you for asking
Love angela xx
That is such good news Angela. I think we get so utterly worn down by our health so any relief is so welcome. I take Garbapentin at night, I find it helps my nerve pain in my legs. I hope the Pregabalin works for you. I slept last night so feel better for it thank you. Take care xx
Rheumatology appointment update 
GP Appointment
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Immunologist/Allergist Appointment 
London appointment 
